“Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.”
I’ve been blessed by the kindest comments of people’s perceptions of me. “You are always so positive”, “You have quite the social life”, “People gravitate towards you”,”I wish I had the God you have”, “You are so lucky”, and so on and so forth. What an honor it is when peoples eyes gaze upon you with such uplifting ideals and values of your core. Sometimes these things are true, and others they are mere illusions.
What they don’t see is the day I am laying in bed wondering how I will survive it. My body aches so badly I can barely move. I am so exhausted, that espresso has no impact, and although I slept ten hours the night before, it felt like one. My stomach is off because it is being pumped with a handful of antibiotics that are wrecking havoc inside it. I feel like I have a fever, yet I don’t. The chills, the sweats, each take turn taking a dance within me. I feel faint and dizzy. My legs give out in public and I have to literally talk myself through from the door to the car. I am in a fog. My memory that was once known as the very best, is now often fuzzy and confused. All because a tic bit me, I had no bullseye, and had no clue for a very long time.
Thank God it has been found. Although the medical profession continues to not see it as the epidemic it is. They also think a thirty-day supply of antibiotics will “cure” it, and think it’s a new bite when it comes back in a few months or a few years. As it lingers in the body it gets worse and worse, and steals so much of what makes you wonderful. When untreated, it serves and copycats a million other “treatable” things, when in fact it’s not that at all.
I found this out about myself thanks to my very sick son. My oldest who has Autism, developed some extreme rage and behaviors. The psychiatric medications were like band aids, sometimes working, sometimes bleeding through. He was given a range of diagnosis, but nothing was quite fitting. For two years, I can confidently say, my biggest joy for my husband and I, was that we kept him alive. We took him to so many medical professionals that kept saying they couldn’t quite figure him out. His depression was severe for a child nine, and ten years old. Often he looked as if he was on the brink of a psychiatric break. Seeing as my degree is in mental health, I often beat myself up over the fact I could not pin point what I was seeing, or save him from all the pain he was in. For awhile there, I thought this was a lost cause, and that I would never see my true son again.
Those in my inner circle either hugged and loved me, or slowly backed away. Its true what they say, you find out who your true friends are in your hardest of times. You would think when you share with friends that your greatest achievement is keeping your kid alive, they would show up! Mental health issues are so confining, and lonely. If it was a physical disease, I am sure my doorbell would’ve been rung with dinner, or actually maybe not. It was heartbreaking to learn that some only wanted to know you in the happy perspective, and not through the hard stuff. Value those that show up for the hard stuff! They are few and far between.
I learned the words PANDAS/PANS a few years ago when most thought it sounded crazy, and not a “thing”. This “thing” that the overall, the medical community still chooses to question, and not treat correctly, is not only a thing- but nearly cost me everything! This past January 2018, my entire family tested positive for some type of co-infection, lyme, or strep- some with one, some with all. That is all FIVE of us- sick, living in Conneticut where Lyme disease was named- but what epidemic? My oldest with it in his brain, and the reason we were seeing such extreme concerns that we couldn’t figure out. We are all on long-term antibiotics thanks to an amazing doctor. The results have been life changing. I actually feel like I have my son back after two years!!! My daughter had lyme, co-infections, and strep so bad, that the doctor said she was a ticking time bomb of PANDAS/PANS too! My two youngest had strep all the time and I wondered why that was, with no answers from the medical community other than ten-day antibiotics! My personal symptoms of severe anxiety and depression that no antidepressant worked on in the past, now lifted. Sadly the doctors that actually treat this correctly, and the labs that test blood correctly, are all done out-of-pocket thanks to our corrupt medical system that is all about the money-making business, and not about the cure. I stand to wonder, what if a huge chunk of our mental health concerns could be simply cured by antibiotics what would that do to our pharmaceuticals and psychiatric departments? I had been tested for Lyme, seven times in the past, all negative, done by the least reliable but most common Lyme test given in the United States. That means, it was years I was being seen as negative for this disease, while it grew inside of me.
I have learned an abundant amount of lessons on this journey. My most important being, never giving up hope, or faith. Also, just because someone has a Dr. before their name, doesn’t mean they are fully informed, open to learning, or correct in diagnosing what is complex at hand. That I am stronger than I ever thought I could be, and that the power of prayer works. That although modern medicine can “cure” this, it is an ongoing roller coaster ride that I would not wish upon my very worst enemy.
Personally, I have been able to show up and give my all at a job that takes all of me, while being treated myself. This in itself, has floored me. I always thought I was weak and fragile. It is amazing how the worst storms of your life show you fragility isn’t an option when you need to be ironclad. Our house looks like a pharmacy dosing out insane amount of supplements and antibiotics. However, we are better, more present, and finally- FINALLY- able to leave the house. Most importantly, I not only know the what — but the WHO — matters most.
And the WHO still see me as positive, loving, and wonderful. While holding me while I am broken and a mess.
seekingup
Seeking Up 
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